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Agency Life

A Beautiful Brain & Brave Minds

A Beautiful Brain & Brave Minds

Danielle Smith

Danielle Smith

September 4, 2019

Red Havas Account Supervisor Alyssa Carfi is a brain injury survivor celebrating the gift of life by giving back through her non-profit, Brave Minds Project.

"Typically on my Alive Day, I try to take an inventory of my life. I make sure I am truly living the life I want to live, because I know I can’t take any second for granted."

September is National Brain Aneurysm Awareness Month. To honor and celebrate the cause, Alyssa Carfi, an Account Supervisor at Red Havas shares the story of how having a brain aneurysm changed her life. One of those changes involved founding Brave Minds Project, a registered New Jersey nonprofit, and 501(c)(3) that raises money to donate to programs designed to help others living with brain damage. In August, Brave Minds Project held a charity ride at SoulCycle, raising $2,500 that which will be donated to a patient in recovery from brain surgery. You can follow along on Instagram @bravemindsproject.

 

How did living with a brain condition come to be part of your story?

I was just 15 years old when doctors found a cavernoma—often referred to as a “cavernous malformation”—lodged deep in my brainstem. To put it in layman’s terms, I had a cluster of abnormal blood vessels that resembled raspberries located in my brainstem. Every time those blood vessels bled, they put pressure on the nerves in the surrounding area. In my case, this affected the sixth and seventh cranial nerves on the right side of my face, primarily my right eye and my smile. 

When I was 18, my cavernoma bled again, causing even more damage. My doctors advised us that it was time to remove what they could of it. As one doctor said, I was a “ticking time bomb,” and not removing the cavernoma could potentially result in even more damage. Although the risks were tremendously high, I underwent brain surgery just a few days after my high school graduation. 

 

You celebrate something called “Alive Days”; what are these days and what do they mean to you?

An Alive Day is the day when you could have died but didn’t. 

For me, my Alive Day is the day I came out of brain surgery. With any procedure, there are going to be uncertainties and maybe even complications, and for brainstem surgery, these risks increase. Doctors from around the country made it very clear that my outcome wouldn’t be known until I woke up from surgery. My family had been told numerous times that my speech, vision, breathing, eating and just about every other motor skill could be compromised during the surgery because of the location of my cavernoma. I am beyond grateful that I came out of surgery with nothing but the loss of facial movement on my right side and some balance issues. Needless to say, celebrating my Alive Day is truly special. 

Typically on my Alive Day, I try to take an inventory of my life. I make sure I am truly living the life I want to live, because I know I can’t take any second for granted. This year, because it was my 10-year anniversary and I wanted to do something big, I went skydiving. The feeling was so freeing—so much so that Brave Minds Project is planning to host a large event celebrating the Alive Days of other brain surgery survivors and encourage them to skydive.

 

Tell us about Brave Minds Project. Why did you start this and what are your dreams for this nonprofit?

As I was coming up on my 10-year brain surgery anniversary, I realized I wanted to do something significant to celebrate. While I am entirely grateful that my parents found the best neurosurgeon to care for me and that my doctors explained everything to me each and every step of the way, I always felt like something was lacking in my experience. Ten years later, I realized that “something” was a community of others who were around my age that were going through the same experience. That is when Brave Minds Project was born!

Brave Minds Project raises awareness and funds while providing support to patients 10 to 29 years old who have been diagnosed with brain and brainstem conditions. It is our mission to provide support from diagnosis through recovery by offering access to treatment and assistance throughout the process. We also create mentorship programs (both educational and professional), providing support groups for patients and their families, and more.

Why ages 10 to 29? Well, this is the forgotten demographic. When you’re between these ages, you’re trying to figure out who you are and who you want to be in life, and then you find out you need brain surgery and your entire world gets turned upside down. It’s not just your life that changes—it also impacts the lives of your family and friends. With Brave Minds Project, we’re hopeful we can serve as an ally and support system for those affected by brain and brainstem conditions. 

Personally, my goal is to be an advocate for people with brain and brainstem conditions, as well as for those living with various disabilities. When I was starting out in my career, I was often the only woman at the table, the youngest person in the room, and the only person with a disability. I want people to know that they have an ally and someone they can speak to. I believe this starts with making sure that inclusion—not just diversity—is always part of the conversation. 

"If you told me last year that I would be able to get my nonprofit up and running, while working a fulltime job, I wouldn’t have believed you for a second."

 

What led you to a career in PR and advertising?

When I was younger, I would watch commercials and look through magazines, constantly critiquing and commenting on the ads. By age 12, I was certain I wanted to go into advertising. While in middle school and high school, I worked with my cousin, who owned a boutique advertising agency, and I later worked with a family friend who owned a magazine company. I found the work they were doing to be so fascinating—much more exciting than the algebra I was learning in school!

After high school, I went to the Fashion Institute of Technology, where I studied advertising, marketing, and communications. I was sure I’d end up in advertising, but once I started taking public relations courses and completed a few internships in PR, I decided that was where my passion lies. 

 

What excites you, both personally and professionally?

I’m a people person. I love the work I do because it involves people and helping them make decisions. 

 

What is something your colleagues would be surprised to learn about you?

I had more than 11 surgeries following my brain surgery. 

 

What is the best piece of advice you ever received?

“Follow your dreams, and don’t let anyone tell you that you can’t do it.”

My mom used to tell me this when I was a little girl, and as I got older, I realized that while it sounds like a cliché, it’s hands down the best advice I ever got, because it applies to so much in life. This is also the advice that guided me in the months of recovery after my brain surgery. I easily could have pushed my dreams aside and pursued an easier route, but I chose to forge ahead and not let the odds scare me. I went to college, studied abroad twice, and even graduated on time despite having multiple surgeries and procedures done while in college. 

And now, as I work full-time and run Brave Minds Project, it’s safe to say that this “cliché advice” still rings true in my life.

 

Anything else you’d like to tell us about your story, your nonprofit, or your career?

If you told me last year that I would be able to get my nonprofit up and running, while working a fulltime job, I wouldn’t have believed you for a second. Yet, here I am, making it all work.

 Brave Minds Project is always looking for brands to sponsor Courage Kits for patients in recovery. If you’re interested in helping a patient and adding a little bit of cheer to their day, Brave Minds Project is now accepting donations and items to fill Courage Kits that are hand delivered to each patient recipient. The Courage Kits include items such as puzzles, nail polish, face masks, journals, gift cards, and more. Brave Minds Project is also accepting items for family members to build out our Care Package program. All donations are greatly appreciated by Brave Minds and the community. Learn more and donate here

"Typically on my Alive Day, I try to take an inventory of my life. I make sure I am truly living the life I want to live, because I know I can’t take any second for granted."

September is National Brain Aneurysm Awareness Month. To honor and celebrate the cause, Alyssa Carfi, an Account Supervisor at Red Havas shares the story of how having a brain aneurysm changed her life. One of those changes involved founding Brave Minds Project, a registered New Jersey nonprofit, and 501(c)(3) that raises money to donate to programs designed to help others living with brain damage. In August, Brave Minds Project held a charity ride at SoulCycle, raising $2,500 that which will be donated to a patient in recovery from brain surgery. You can follow along on Instagram @bravemindsproject.

 

How did living with a brain condition come to be part of your story?

I was just 15 years old when doctors found a cavernoma—often referred to as a “cavernous malformation”—lodged deep in my brainstem. To put it in layman’s terms, I had a cluster of abnormal blood vessels that resembled raspberries located in my brainstem. Every time those blood vessels bled, they put pressure on the nerves in the surrounding area. In my case, this affected the sixth and seventh cranial nerves on the right side of my face, primarily my right eye and my smile. 

When I was 18, my cavernoma bled again, causing even more damage. My doctors advised us that it was time to remove what they could of it. As one doctor said, I was a “ticking time bomb,” and not removing the cavernoma could potentially result in even more damage. Although the risks were tremendously high, I underwent brain surgery just a few days after my high school graduation. 

 

You celebrate something called “Alive Days”; what are these days and what do they mean to you?

An Alive Day is the day when you could have died but didn’t. 

For me, my Alive Day is the day I came out of brain surgery. With any procedure, there are going to be uncertainties and maybe even complications, and for brainstem surgery, these risks increase. Doctors from around the country made it very clear that my outcome wouldn’t be known until I woke up from surgery. My family had been told numerous times that my speech, vision, breathing, eating and just about every other motor skill could be compromised during the surgery because of the location of my cavernoma. I am beyond grateful that I came out of surgery with nothing but the loss of facial movement on my right side and some balance issues. Needless to say, celebrating my Alive Day is truly special. 

Typically on my Alive Day, I try to take an inventory of my life. I make sure I am truly living the life I want to live, because I know I can’t take any second for granted. This year, because it was my 10-year anniversary and I wanted to do something big, I went skydiving. The feeling was so freeing—so much so that Brave Minds Project is planning to host a large event celebrating the Alive Days of other brain surgery survivors and encourage them to skydive.

 

Tell us about Brave Minds Project. Why did you start this and what are your dreams for this nonprofit?

As I was coming up on my 10-year brain surgery anniversary, I realized I wanted to do something significant to celebrate. While I am entirely grateful that my parents found the best neurosurgeon to care for me and that my doctors explained everything to me each and every step of the way, I always felt like something was lacking in my experience. Ten years later, I realized that “something” was a community of others who were around my age that were going through the same experience. That is when Brave Minds Project was born!

Brave Minds Project raises awareness and funds while providing support to patients 10 to 29 years old who have been diagnosed with brain and brainstem conditions. It is our mission to provide support from diagnosis through recovery by offering access to treatment and assistance throughout the process. We also create mentorship programs (both educational and professional), providing support groups for patients and their families, and more.

Why ages 10 to 29? Well, this is the forgotten demographic. When you’re between these ages, you’re trying to figure out who you are and who you want to be in life, and then you find out you need brain surgery and your entire world gets turned upside down. It’s not just your life that changes—it also impacts the lives of your family and friends. With Brave Minds Project, we’re hopeful we can serve as an ally and support system for those affected by brain and brainstem conditions. 

Personally, my goal is to be an advocate for people with brain and brainstem conditions, as well as for those living with various disabilities. When I was starting out in my career, I was often the only woman at the table, the youngest person in the room, and the only person with a disability. I want people to know that they have an ally and someone they can speak to. I believe this starts with making sure that inclusion—not just diversity—is always part of the conversation. 

"If you told me last year that I would be able to get my nonprofit up and running, while working a fulltime job, I wouldn’t have believed you for a second."

 

What led you to a career in PR and advertising?

When I was younger, I would watch commercials and look through magazines, constantly critiquing and commenting on the ads. By age 12, I was certain I wanted to go into advertising. While in middle school and high school, I worked with my cousin, who owned a boutique advertising agency, and I later worked with a family friend who owned a magazine company. I found the work they were doing to be so fascinating—much more exciting than the algebra I was learning in school!

After high school, I went to the Fashion Institute of Technology, where I studied advertising, marketing, and communications. I was sure I’d end up in advertising, but once I started taking public relations courses and completed a few internships in PR, I decided that was where my passion lies. 

 

What excites you, both personally and professionally?

I’m a people person. I love the work I do because it involves people and helping them make decisions. 

 

What is something your colleagues would be surprised to learn about you?

I had more than 11 surgeries following my brain surgery. 

 

What is the best piece of advice you ever received?

“Follow your dreams, and don’t let anyone tell you that you can’t do it.”

My mom used to tell me this when I was a little girl, and as I got older, I realized that while it sounds like a cliché, it’s hands down the best advice I ever got, because it applies to so much in life. This is also the advice that guided me in the months of recovery after my brain surgery. I easily could have pushed my dreams aside and pursued an easier route, but I chose to forge ahead and not let the odds scare me. I went to college, studied abroad twice, and even graduated on time despite having multiple surgeries and procedures done while in college. 

And now, as I work full-time and run Brave Minds Project, it’s safe to say that this “cliché advice” still rings true in my life.

 

Anything else you’d like to tell us about your story, your nonprofit, or your career?

If you told me last year that I would be able to get my nonprofit up and running, while working a fulltime job, I wouldn’t have believed you for a second. Yet, here I am, making it all work.

 Brave Minds Project is always looking for brands to sponsor Courage Kits for patients in recovery. If you’re interested in helping a patient and adding a little bit of cheer to their day, Brave Minds Project is now accepting donations and items to fill Courage Kits that are hand delivered to each patient recipient. The Courage Kits include items such as puzzles, nail polish, face masks, journals, gift cards, and more. Brave Minds Project is also accepting items for family members to build out our Care Package program. All donations are greatly appreciated by Brave Minds and the community. Learn more and donate here

Danielle Smith is the Communications Manager of Havas Group. She’s believes every meal can be tacos if you have tortillas and the heart to try.

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